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Generally Unwell And Biopsy

Coconutmilk

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Coconutmilk Rookie
Coconutmilk
Posted

Hello everyone I am 20yrs old from england and i joined these forums a couple of days ago to learn about celiacs.

I had a positive blood test for celiacs a while back and tomorrow have an assessment, where i will find out when my biopsy is. The thing is though, i am feeling really bad at the moment, having fevers needing to have bowel movements urgently up to 10times a day, these always give me abdominal pain and the stools are often very pale and always with blood and mucus (sorry if too much information). I am still eating gluten so as not to make the biopsy a false negative.

I was just wondering if people had this too and whether my symptoms are normal for celiacs, or could there be other causes contributing too?

Also im very nervous about the biopsy can anybody share their experience and tell me what i might expect.

Thanks for your time

Emma

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ang1e0251 Contributor
ang1e0251
Posted

Welcome, Emma. I too was very nervous about the biopsy but it was a piece of cake with no scarey stuff and no afteraffects. I would do it again in a minute. Don't let it bother you.

Your symptoms do sound typical but that doesn't mean there can't be something else going on. But celiac disease is a big deal and should be tested first. It sounds like your dr's are doing you right on that. Ask them just how little gluten you should be eating before you biopsy. Maybe you can have a little less than what you are currently eating.

I'm sorry you're feeling so unwell. I hope your test is scheduled quickly so you can start your recovery.

Coconutmilk Rookie
Coconutmilk
Posted
  • Author

Hello,

Thank you for your reply and advice, your words are honestly so comforting to hear. I will speak to my doctors and find out whether i can eat less, as i usually eat gluten within two meals a day at least. I hope this is the only problem as I will be happy to stop eating gluten to feel better, just get scared as i cant help but want answers sooner, as my mum has suffered with problems all her life.

Thanks again, i will remember what you have said.

Emma

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      High DGP-A with normal IGA

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    • captaincrab55
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    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

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      High DGP-A with normal IGA

      By rei.b · Posted

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
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